The Last Taboo

Talking about the deeper meaning of life and death is still a taboo in American culture. Even today, we still feel uncomfortable and awkward talking about these kinds of issues. Sex, increasingly more explicitly shown in our society, has been lost long ago as a taboo, as we have been revealed as a nation of secret voyeurs. Sex is no longer a taboo subject. In fact, no topic is held back from public display and discussion, except death. Death is something we want to forget about. A 1991 Gallup poll showed that Americans almost never think of death, or think of it only occasionally.

Children are shielded from it at a personal level, though ironically, they are exposed by the media to its most violent aspects. Arnold Toynbee, in 1973, noted that in our society “death is considered un-American, an affront to every citizen’s right to life, liberty, and the pursuit of happiness.” We live in a culture that extols rugged individualism and a philosophy of life that says that you can accomplish anything you set your mind to. And we infer that includes beating out death. It is little wonder then, that people are unprepared when an illness, like cancer, strikes with its potential threat of death. The result is a crisis of great proportions. One must confront not only biological death, but squarely what it means not to be alive. Some struggle with the inability to imagine they could die, despite the intellectual awareness that their illness is not curable.

“What does it mean not to be?” “What is death?” “What does it mean to me?” These questions frame the existential crisis we all must face at some time. We all must deal with the human side of illness when death is the inevitable outcome. Treatment changes at this stage, from control of disease to treatment aimed at comfort, relief from pain and suffering, and maximal quality of life despite illness.

Dr. Jared Kass, of Lesley College, has cast this existential reality in a helpful light by calling it a crisis of meaning. This concept comes from the work of Viktor Frankl, the Viennese psychiatrist who wrote about the deeply human need to find meaning in life. Facing illness at an advanced stage creates a need to try to make some sense out of what is happening, to establish some coherence, which means to give it some meaning, to try to “get things back under control” as events tumble out of control. Daniel Callahan, Ph.D., eminent ethicist and author of The Troubled Dream of Life, feels that much of our present obsession about “death with dignity” is really a veiled attempt to control dying. What we are actually doing is finding ways to avoid the real issue, the meaning of death itself. Death is still unthinkable and unspeakable.

Another aspect of illness that leads one to search for meaning is the sense of utter helplessness. “I feel so totally helpless in the face of this illness,” people with advanced disease frequently say. Some people, aware of their personal helplessness, reach out for something stronger, more powerful that the “self”. This leads many to recall the old belief systems that provided solace and a sense of a connection to some more powerful figure, like God. The crisis of meaning is diminished by the ability to find some coherence, meaning, and connection to some greater whole than oneself. This is where the psychological and spiritual meet in the care of patients near the end of life.

In palliative care (care aimed at providing comfort and not focused on cure of disease), the crisis of meaning is embedded within four issues, broadly referred to as the pain and suffering associated with illness. They are:

The physical: The experience of pain or other troublesome bodily symptoms.

The psychological: The emotional confrontation with your own death.

The social: Facing separation from those you love most in life.

The spiritual: The need to reach out to a stronger, more powerful force beyond the self, to a transcendent presence or connectedness.

The Book of Job is probably our best source for understanding this type of pain and suffering, as Rabbi Harold Kushner points out in his book, When Bad Things Happen to Good People. Job goes through overwhelming suffering with the loss of his family, his livelihood, and his health, as painful sores cover his body. The world’s great religions all offer principles for dealing with suffering. Religious beliefs enhance coping by promoting a feeling of control and calmness despite the uncertainty, the threat of death, the frightening unknown, and the loss of all that is dear. They also provide a set of moral values and a model for behavior during periods of suffering. Prayer and meditation offer solace and comfort, and are available as a way to reach out at will to a higher power. What is important is an explicit existential perspective: a concept of life and death, of life after death, and of connection to a larger whole.

These concepts relate to a broad spiritual outlook. For some, this may be more philosophical than religious, but whatever the source, it yields meaning. The point is that we all have some well-honed beliefs, perhaps not well articulated, but nevertheless there to be called on during a crisis of meaning. Having a strong belief system and ties to others who share it, gives you a leg up on the situation. Others have to struggle to find their own way. Callahan noted in 1995: “The meaning of death is…relegated to the privacy of religious beliefs or, in their absence, whatever personal resources people can bring to

[it] on their own.” You are pretty much on your own, since our society doesn’t offer any “built-ins” to make it easier to talk with others to help find our own way.

This is when those who offer counseling can help you tap into your own resources. The purpose of counseling is not to say, “I have this great belief system to give you,” but rather to assist people in sorting out their own beliefs that can help. Viktor Frankl wrote: “The psychiatrist cannot show the patient what that meaning is, but he may well show him that there is a meaning, and that it remains meaningful under any condition.” It is a personal journey, and a true helper is not one who asks you to change your beliefs, but rather one who says, “I’m here to help you find your own meaning.”

The interaction of the psychological and spiritual, two big components of human suffering, often cannot be fully separated in dealing with an illness of great proportions. In fact, Kass speaks of a “psychospiritual” crisis of meaning, acknowledging in that way, that the two are intertwined. Irvin Yalom, in his book Existential Psychotherapy, points out the inadequacy of Freud’s psychodynamic psychotherapy, based on the id, ego, and superego, to deal with the issues around life-threatening illness and death. He notes that our most basic concerns, which are brought to the fore by illness, are our fears of death, isolation, and meaninglessness, and our recognition of the absence of ultimate control over our lives.

The concepts of Viktor Frankl, as suggested earlier, are helpful in dealing with serious illness. In his book The Doctor and the Soul, he makes the observation that we all share an innate, deep desire to give as much meaning as possible to our life, to actualize as many values as possible. He refers to this profound, immeasurable need as the “will to meaning.” This need extends even in the face of suffering. “Even a man who finds himself in great distress, in which neither activity nor creativity can seemingly bring value to life, nor experience give meaning to it, even such a man can still give his life meaning by the way he faces his fate, his distress, by taking his unavoidable suffering upon himself. Life holds a meaning for each and every individual, and even more, it retains this meaning to his last breath. Life never ceases to have a meaning”.

The Doctor and the Soul, a manuscript Frankl wrote before going to the concentration camps, was taken from him while he was at Auschwitz, and he rewrote it after World War II. This process of reflection and new writing led to his developing a form of psychotherapy based on meaning, called logotherapy, described in Man’s Search for Meaning. He noted that man is pushed by drives but pulled by meaning. One must make a conscious decision to pursue the meaning “to form a picture of man in his wholeness, which includes the spiritual (not to mean religious).” Frankl feels that meaning is strictly personal, not universal; that it is unique to each individual, and that you must find your own meaning, which is different from that of others.

Frankl’s meaning-driven concepts are played out daily as individuals struggle to give some meaning to their difficult situations. Some seek to give meaning to their dying by “doing it well” (perhaps courageously), so that their children or family might recall their example when their time comes to face their own death.

One of the most poignant stories about trying to find meaning in a painful, intolerable situation comes from Father Tom McDonnell, who chose to work the night shift at Memorial Sloan Kettering Cancer Center because “that’s when people need me most.” In one of his morning reports, which he calls News of the Night, he recounted his visit in a hospital room where a young man’s mother lay dying.

“Marcos accompanied his mom from Venezuela. He came because he spoke English and his mom could not. Dad made the painful decision to stay at home to care for their other child, who was severely retarded. Marcos is twenty-one and was greatly admired by the nurses and staff, not only because he’s an attractive and wonderful young man, but mostly because of his total commitment to his bedside vigil. Today, the doctors told him that there was nothing more that they could do for his mother, and that he would have to make a decision as to whether or not treatment should end. He asked to see me; he wanted to know about the morality of stopping treatment. “Would it be murder?” he asked. We had a long talk and he described one of the most poignant “deals” I’ve ever heard negotiated with God. He told me, “This is the deal I’ve made with God. God, I’m all grown up and I can accept it if you have to take my mom. But this is what I want you to do if you have to take someone to heaven. You can take my mother, but you have to leave these two other mommas [patients he met here at Memorial], because their children are not yet grown up and they need their moms.” I knew that I had just heard the ultimate in human generosity. Marcos came to understand through our talks that he wasn’t murdering his mother by stopping treatment. And he found a remarkable way to give meaning to his impending loss by asking God to protect the mothers he had come to like”.

Tuesdays with Morrie by Mitch Albom remained on the New York Times bestseller list for many months. It gets to the hearts of the search for meaning through the philosophy of Morrie Schwartz, a retired professor of sociology. Morrie may be our contemporary equivalent of Viktor Frankl. Albom, a successful sportswriter, inadvertently learned of the serious illness of his beloved professor of sociology from his college days at Brandeis University. Morrie had developed amyotrophic lateral sclerosis (ALS), often called Lou Gehrig’s disease. Mitch saw Ted Koppel interviewing him on TV about his illness. Albom phoned Schwartz and went to see him in Boston. It was a meaningful reconnection of the two. After that, he flew weekly for his Tuesday “class” with Morrie. The book came out of these meetings, a “final thesis.”

Albom wrote:

The last class of my old professor’s life took place once a week in his house, by a window in his study where he could watch a small hibiscus plant shed its pink leaves. . . . the subject was The Meaning of Life. It was taught from experience. No books were required, yet many topics were covered including love, work, community, family, aging, forgiveness, and finally death.

Morrie recognized his special status and used it as a platform from which to talk about his situation, often with great humor.

You know, Mitch, now that I’m dying, I’ve become more interesting to people. Here’s the thing. People see me as a bridge. I’m not as alive as I used to be, but I’m not dead yet. I’m sort of . . . .in between. I’m on the last great journey here —and people want me to tell them what to pack.

And he did tell them, through Mitch:

“So many people walk around with a meaningless life. They seem half asleep even when they’re busy doing things they think are important. This is because they’re chasing the wrong things. The way you get meaning in your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning. “The truth is, Mitch,” he said, “once you learn how to die, you learn how to live. You strip away all that stuff and focus on the essentials. Learn how to die and you learn how to live. . . . It’s natural to die. . . . It’s part of the deal we made. . . . The fact that we make such a big hullabaloo over it is all because we don’t see ourselves as part of nature. We think because we’re human we’re something above nature. Now, here’s the payoff. Here is how we are different from the wonderful plants and animals. As long as we can love each other, and remember the feeling of love we had, we can die without ever really going away. All the love you created is still there. . . . You live on in the hearts of everyone you have touched and nurtured while you were here. . . . Death ends a life, not a relationship.”

It is interesting to look back and see how this existential crisis has been handled by society in different ways at different times in the past. In the nineteenth century and well into the twentieth, one did not reveal the cancer diagnosis because of the prevailing attitude that cancer equaled death. It was considered cruel to take away a person’s hope since the prognosis was zero. A “white lie” was justified to keep the ill person from knowing the truth. Of course, the patient was acutely aware of symptoms and signs of progressive illness, and the reality of what was happening, but he or she also responded to the taboo by asking few questions.

A façade of “everything’s going to be okay” prevailed, with all parties recognizing the unspoken truth but with honest discussions occurring only between the doctor and the family.This isolation was described beautifully in Tolstoy’s nineteenth century story The Death of Ivan Ilyich. Ilyich, minister of the court of Justice, falls ill with a pain in his side that does not improve; in fact, it grows worse. Yet his doctors and family pretend and make light of it. Tolstoy wrote: “This deception tortured him—-their not wishing to admit what they all knew and what he knew, but wanting to lie to him concerning his terrible condition, and wishing and forcing him to participate in that lie.” Tolstoy described the tremendous sense of isolation and loneliness of his character, knowing that he was getting sicker and sicker, yet having those around him denying it. Only his servant Geraism honestly acknowledged his illness. When Ivan Ilyich apologized for his helplessness, Geraism said, “Oh, why sir, what’s a little trouble? It’s a case of illness with you, sir.” And this decent act, Gerasim’s reaching out to Ilyich and holding his legs in a comfortable position, is a kind of solace that someone acknowledges his reality.

The first papers published on patient’s reactions to cancer, in the 1950s, from the Massachusetts General Hospital and Memorial, noted that patients asked fewer and fewer questions about their illness as it progressed. The patient acquiesced to the power of the conspiracy of silence, in which only doctor and family communicated honestly. Our notions of what is most kind and humane are sometimes misguided. We owe a great deal to Dr. Elisabeth Kubler-Ross, who began writing in the 1960s to bring death “out of the closet.” She started talking to dying patients in the 1950s and then began to speak and write, always passionately, about the fact that many patients did want to talk about their imminent death. She wrote a book, On Death and Dying, that was a powerful influence, particularly on nurses taking care of patients with cancer and also on patients themselves, who found it one of the few books available to read about serious illness. She pointed out in her latest book, The Wheel of Life:

Once patients started to speak-for some merely whispering was an enormous and taxing challenge-it was hard to get them to stop the flow of feelings they’d been forced to repress. Most said they had learned about their illness not from their doctors, but from a change in the behavior of their family and friends. Suddenly, there was a distance and a dishonesty, when what they wanted the most was the truth. Most of them felt their nurses were more empathic and helpful than their doctors. I remember one woman crying out, “All my doctor wants to talk about is the size of my liver. What do I care, at this point, about the size of my liver? I have five children at home who need to be taken care of. That’s what’s killing me. And no one will talk to me about that!” With a chaplain’s help, she was able to experience that most wanted honesty, closure, and peace.

Kubler-Ross influenced cancer care tremendously, at a time when disclosure of the diagnosis was increasing anyway, based on the issue of patient’s rights to knowledge of their illness and informed consent for treatment. This openness was useful, but it led medical staffs to be more assertive in talking about death, and many patients who chose not to talk about it, were forced to do so by well-meaning staff. Kubler-Ross also proposed that patients with cancer go through stages of dying, ending in acceptance. The stages too, were overly interpreted. Some patients were considered “stuck” in a particular stage in going through the progressive psychological steps to acceptance. These concepts have been softened over the years, with a return to Osler’s premise that we are each unique and “die as we lived.” Hospice philosophy has changed to recognize people’s inability to “do nothing” and wait to die. Trying a new treatment or a complementary therapy suggested by someone is far more the mode today, even while receiving hospice care.

At about the same time that Kubler-Ross was working in the United States, Dame Cicely Saunders began her groundbreaking work in London. Initially, she tried to get better treatment of pain for dying patients, and later, to improve the overall conditions for patients with incurable illness. The use of morphine was restricted to a set schedule, and she realized that many patients were suffering terrible pain because the morphine was not being given according to their level of pain and on a schedule to prevent pain from breaking through; pain was being treated only when it became severe. This was the beginning of the clinical study of pain control, which has changed patient’s experiences and is beginning to reduce fears of “I’ll be left to die in pain.” These efforts led Dame Cicely to develop hospice care, which she established at St. Christopher’s Hospital in London.

The first hospice in the United States was established in the 1960s in New Haven, Connecticut. Today, there are hospices in most cities. The hospice system encourages maintaining the person at home, if possible, bringing equipment and emotional support to the patient and family. This is far more readily achieved today, with pain medicines more easily given at home by means of infusion pumps, intravenous lines, and skin patches through which the analgesic is absorbed. Most people, when asked, say they would prefer to die at home. However, many also are concerned about the burden that is placed on the family. Sometimes, it simply isn’t possible to keep the patient at home, and the hospice unit comes close to being homelike, with its focus on caring.

The philosophy of care directed toward the physical, psychological, social, and spiritual aspects of illness is far more widely accepted today. There is still some reluctance on the side of the families and patients who equate referral to a hospice program with abandonment, and feel the medical caretakers have given up on them or their loved one. However, when they experience the hospice and its remarkably kind and understanding staff, they lose their concerns. Ira Byock, a palliative care physician with great compassion, points out that the time near the end of life can be one of great emotional growth. I have seen families who seemed to experience some of their truly finest hours as they drew closer and were able to acknowledge both their love and their pain. Dame Cicely, in a recent lecture in New York, said, “I think it is a gift to be able to know what is coming and allow one to use the time of living for doing and saying things that otherwise might remain unsaid, like ‘I love you, I’m sorry, and good-bye.'” These last hours are far better spent in a quiet atmosphere than in a busy hospital units geared to acute care.

People vary enormously in how much they can verbalize powerful emotions under the stress of advancing illness. Often the conversation is mundane, but both patients and loved ones know and feel the poignancy and profound reality of the moment. Those unspoken emotions are exchanged as truthfully and powerfully as if their farewells had been verbally expressed. Sometimes, the survivor feels guilty for not having said more, without recognizing that the dialogue followed the same pattern that characterized all their previous interactions. This is another instance of human communication for which there is no right or wrong way, only what feels right. Dr. Holland recalls the time when her mother was very ill with colon cancer in rural Texas. “Her communications about her illness and death followed the pattern she knew from early in this century, perhaps also tempered by the Texas philosophy of seldom stating the obvious, especially if it is laden with emotion. We had only one conversation in which we talked about her cancer and her wishes about treatment. She did not want surgery and chose to “take my chances” and to remain at home. We both knew what this meant, but as she grew sicker, we never mentioned the word cancer or the outcome. It wasn’t necessary to repeat the words for us to share the closeness of our moments together and the awareness that these were, indeed, last moments”.

Terry Tempest Williams, in her remarkable book Refugee, carries the reader through her mother’s illness and death. She points out the value of silence. After listening to the music of Chopin together, her mother says, “I just want to listen to the silence with you by my side.” And she tells us of the importance of touching when her mother says, “It feels so good to hold your hand. I don’t feel so disconnected.”

We have been through a period recently, almost as bad as the “white lie” era, which has been dubbed the “truth-dumping” era, sometimes wryly called “terminal candor.” Given the legal mandate to disclose the medical facts and prognosis, some doctors have found it easier and less emotionally draining simply to announce the facts and then leave the room. As Jack Price put it, there is then no one “to pick up the pieces on the floor.”

Fortunately, this practice is being replaced with the availability of better training of doctors and the knowledge that it isn’t so much what you say but how you say it. One can give painful news in a kind and compassionate manner, and encourage hope to attain realistic goals-not a cure, but the hope to visit a special person, for example, or to attend an important wedding or other occasion. We have to temper truth telling with allowance for hope to be maintained even when rooted in reality.

A remarkable play, Wit, received the Pulitzer Prize in 1999. Written by Margaret Edson, a kindergarten teacher in Atlanta, the play gets to the heart of some of the inhumanities of medical care through the voice of Vivian Bearing, a brilliant English professor and scholar of John Donne’s sonnets. Bearing uses her wit (which means “wisdom” in its oldest sense) and humor to do intellectual and emotional battle with both ovarian cancer (putting it in to a more tolerable context) and the physicians who typify all the “how not to’s.” This battle is aided by a nurse, who understands and advocates for Bearing. While the stage setting is sparse, Bearing, originally and superbly played by Kathleen Chalfant, fills the stage with her presence; she is barefoot and wearing a hospital gown and a red baseball cap to cover her baldness. The quote “I’m told I have stage IV cancer, and there is no stage V”-reflects the flavor of her jousting with the disease. She is equally acerbic with the doctors: “What do you do for exercise?” “Pace.” “Are you having sexual relations?” “Not at the moment.” This mix of humor and humanity, in a woman who has devoted her life as fully to seventeenth-century poetry as her physicians have to modern medicine, is a tour de force. A woman of singular purpose, Bearing finds solace in a friend, who comes to read her in tender exchange of affection as she nears death. For some, like Vivian Bearing, hope is sustained, and is sustaining, in the face of overwhelming disease. Many choose to “fight to the end” and seek the newest, latest experimental treatments available. Others find this kind of hope hard to understand, and chose the comforting care of hospice.

Each is following his or her own usual pattern in reaching decisions. Michael Lerner tells the story of his father’s battle with cancer, which he fought to the end. Lerner is the director of Commonweal, a center for support services for cancer patients in Bolinas, California, and the author of Choices in Healing, in which he describes the range of alternative and complementary therapies. His father, Max Lerner, wrote Wrestling with the Angel, in which he described his passionate love of life. Michael Lerner has a deep insight into the healing of spirit and psyche, which can take place when healing the body isn’t possible. His interest was sparked by his father’s battle with three cancers and death at eighty-nine of a stroke. Ironically, Michael says his father never pursued any of the therapies his son researched. His father coped by never giving up hope. Michael wrote in an article in Reform Judaism:

Even in the face of what sometimes seemed insurmountable odds and terrible suffering, he struggled on, nursing and protecting the hope that somehow he would survive. Was he reconciled to his dying? Not at all. He fought death every inch of the way. There was no consoling belief in a life after death. He fought because he believed that every wonderful thing about life was contained in the life we know: the life between birth and death.

James Holland, Max Lerner’s oncologist, shared many philosophical discussions between the “medical” parts of his visits. They also shared optimism that sustained Max and likely has sustained Jim throughout his years of treating patients who are battling cancer. Michael observed:

I have seen people days away from death who continued to hope for recovery and this hope was an essential element in coping with the ultimate life experience. I know many other cancer patients who were years away from death, who had no fear of death, and some who even looked forward to death with curiosity, interest, or relief. But although they had no difficulty accepting the prospect of death, they also had hopes: hope of a death without too much suffering, hope of a death with dignity, hope of a death that did not impoverish the family, hope of a death that would reunite them with a husband or wife who had died before. When we hope, we can heal. Healing is an inner process through which a person becomes whole. . . . The healing process has a tendency not only to bring people closer to appreciating their individuality and their unique purpose in this world, it also brings them closer to God, spirit, inner peace, connectedness, or whatever we choose to call that which is great and mysterious.

We come full circle back to our search for meaning, even at this stage of life. Michael Lerner speaks clearly about the ways that people individually and successfully use hope, in different ways and with different meanings.

“The opposite of hope, hopelessness, is a devastating emotion that saps the psyche in a profound way. It takes away energy, purpose, and the strength to interact with others at a time when this is so important. Hopelessness, along with depression, most characterizes the person who asks for physician-assisted suicide, seeing nothing left to hold on to or to hope for. There is always hope, even when it is grounded in stark reality. It is possible to entertain two coexisting levels of awareness, one that intellectually recognizes “the reality” that the end of life may be nearing, and another in which a flicker of hope is kept alive by the inexorable advances in cancer treatments and by the benefits gained from the expanding range of alternative therapies”.